Monitoring while on prostap and awaiting surgery?

[77yellow]

It's coming up to 6 months of being on prostap and 3 months on Tibolone and my consultant wants me to continue on them. I am on the waiting list for a hysterectomy and my ovaries removed due to stage 4 endo, adenomyosis and an endometrioma, with bowel involvement (7 months on waiting list).

I'm wondering if I will need blood tests before continuing on prostap?

Does anyone have regular scans to ensure the endometrioma or endometriosis aren't getting worse? 🤔

[Bake2]

Hi, I am currently awaiting a laparoscopy for diagnosis, cystectomy of suspected endometrioma and excision of any endometriosis (if they find any). I have been on the waiting list for around 10 months. The waiting is horrendous isn't it.

In terms of monitoring, I wasn't offered any by the hospital however after about 5 months of being on the waiting list I contacted the consultant's secretary and asked for a repeat ultrasound scan otherwise you are just left to wait with no monitoring or idea if the condition is worsening. I think it may be worth you ringing your consultant's secretary to ask.

I hope you receive a date for your procedure very soon and wish you well with your surgery xx

[77yellow in reply to Bake2]

Thank you for your reply. Sorry to hear you have been waiting 10 months for lap and cystectomy. The waiting times are so long at the minute.

Glad you managed to get another ultrasound, as you say you don't know if the disease is progressing without monitoring. I am surprised there doesn't seem to be routine monitoring.

I will give the consultants secretary a call, although I'm struggling to get hold of her to find out if I'll be continuing on prostap after the usual 6 months, she either doesn't answer the phone or doesn't call back 🤦‍♀️

I hope you hear soon too xx

[Bake2 in reply to 77yellow]

Thank you 😊

Yes I'm surprised there isn't more monitoring in the interim, especially when the wait times are so long.

It is a nightmare trying to get hold of people sometimes. It may be worth speaking to your GP if you are still unable to speak to the secretary as they might be able to send a letter for you instead. Hope you manage to get some answers soon.

Best wishes xx

[77yellow in reply to Bake2]

I would expect regular blood tests and 3 to 6 monthly ultrasound scan as a minimum but this doesn't seem to be the case 😕 It is so hard to get hold of people and there doesn't seem to be any routine follow-up so you are left wondering what the plan is.

Thank you 😊

Take care xx